Yes: this has been an ever-worrying issue for me since about February. It's been in the national press three times now. Rumours of another two years of issues. I switched from my local "computer says no" pharmacy in favour of Boots, who seem a bit more on it. Recommendation seems to be to stay two weeks ahead of your own demand, but I'd say more like four. I've been trying to take fewer capsules to make them last, but the result isn't very pleasant.

The BBC has even started to admit that it could be something to do with Brexit, which must mean that things are getting bad.

'I drive miles in search of life-changing medicine' https://www.bbc.com/news/articles/cd16dd735x3o

https://www.bbc.co.uk/news/articles/cy737x4rry1o

www.theguardian.com/.../pharmacist-uk-drug-shortage-patient-medication

Hi Luke. Thank you for replying to me.

My pharmacist had mentioned that the supply issues might not be resolved until next year, which was worrying enough, but two years is very scary.

I’ve also had to reduce how many I take and I’m eating less too, which isn’t good as I’m already underweight but I don’t want to run out.

I agree with you about Boots. They were the ones able to get me Pancrex powder, which isn’t pleasant to take but it much better than nothing.

I hope you are doing okay throughout all this.

It’s all a bit frightening, isn’t it? I got my last MP to raise it in Parliament. Need to do that again, I think. The response was almost verbatim what they read to me in Boots, but that included the 2026 warning (obviously they don’t want to panic us). I might write to the new Health Secretary as well. We need to keep bringing it up until it’s resolved, I think. I also eat a lot of fruit, as you don’t need to take Creon with, say, an apple in the middle of the day. Grapes, pineapple. All lovely snacks! Hope you’re doing ok too. It’s a source of constant anxiety, obviously: I just try and stay a few weeks ahead and not to panic. 

You’re right, we should contact our MPs (MSPs in my case) so that they know how serious this is.

Yes, some fruit is a great way to help with this. I also saw that Pancreatic Cancer UK had suggested a meal plan to minimise the amount of Creon to if it gets bad:

https://www.pancreaticcancer.org.uk/information/managing-symptoms-and-side-effects/diet-and-pancreatic-cancer/pancreatic-enzyme-replacement-therapy-pert/how-to-deal-with-creon-nutrizym-or-pancrex-supply-issues/

Thank you again 

Thanks for this. I saw that this was reported by the BBC again this week - I think it's important to keep the subject active, both here and north of the border. In my letter to MP, I asked them to not stop going on about this until it was resolved. I wrote to Wes Streeting too. I also found a bit more information online (it seems that the emergency is until November, for now, and then by 2026 it'll all magically be fine...!):

Thanks for this. I saw that this was reported by the BBC again this week - I think it's important to keep the subject active, both here and north of the border. In my letter to MP, I asked them to not stop going on about this until it was resolved. I wrote to Wes Streeting too. I also found a bit more information online (it seems that the emergency is until November, for now, and then by 2026 it'll all magically be fine...!):

I have a Pancreas NET and Sugeon can’t operate - had awful bowel symptoms with Creon, doseage was 3x25000 with main meals  and 1x 25000 at 3 snacks but couldn’t cope so reduced them to 1 x25000 per meal. Still feel ok.

Shotrtage of Creon from Pharmacy locally but Dr has sourced another Brand available for me next week. My Side effect of my NET is Diabetes increased by the 4 weekly Lanreotide injection, it was controlled by compliant diet. Struggling with this as not injecting insulin yet.

I raised this with my MP recently and received the following response:

The new Government has inherited ongoing global supply problems that continue to affect
medicine availability in England. We know how frustrating and distressing this can be for
patients, and we are working closely with industry, the NHS, manufacturers and other
partners in the supply chain to resolve issues as quickly as possible to make sure patients
can access the medicines they need.
There are around 14,000 licensed medicines, and the overwhelming majority are in good
supply. However, medicine supply chains are complex, global and highly regulated and the
NHS does occasionally experience temporary shortages of some medicines. There are a
number of reasons why supply can be disrupted, many of which are not specific to the UK
and are outside the Government’s control; these include manufacturing difficulties, access
to raw materials, sudden demand spikes or distribution issues, and regulatory issues.
Medicine supply issues are global in their nature and, while we cannot always prevent
them, we have a range of well-established processes and tools to manage them when
they arise and to mitigate risks to patients. There is a team in the Department that deals
with medicine supply problems by working closely with the Medicines and Healthcare
products Regulatory Agency, the pharmaceutical industry, NHS England and others
operating in the supply chain. We also work with partners to ensure alternative treatments
are available to patients until their usual treatments are back in stock.
At the time of writing, we are aware of ongoing intermittent supply issues with pancreatic
enzyme replacement therapy (PERT), including Creon capsules. These have been caused
by limited supplies of active pharmaceutical ingredients and manufacturing capacity
constraints. The supplier of Creon has advised that it expects to have regular supplies
released each month for the remainder of the year. The Department is continuing to work
with all suppliers of PERT products to help resolve the issues, expedite deliveries, source
stock from other markets and increase production.
We have also issued comprehensive guidance to healthcare professionals, which provides
advise on how to manage patients while there is disruption to supply. This guidance is
being kept under review and updated will be made as necessary.
In addition, serious shortage protocols (SSPs) are in place for Creon 10000 and 25000
capsules to limit prescriptions to one month’s supply; this is to ensure that Creon remains
available for those patients who need it. An SSP enables community pharmacists to
supply a specified medicine or device with the patient’s consent and without needing to
seek authorisation from the prescriber.
The Department will continue to work closely with the manufacturers to resolve the issues
as soon as possible and to ensure patients have continuous access to medicines. If any
patient is concerned about their treatment, they should discuss this with their clinician at
the earliest opportunity.

I’m glad to see you got a response and it is good to know that they are working on the issue at least.

Unfortunately, I haven’t received a response from my MSP. Even though they would probably say the same thing, I think I might chase them up regardless.

I keep telling myself that this is their job, and that's why we have to keep up the pressure! Although it's not a very enlightening or helpful response. I emailed back, saying how much I appreciated it but also that, no matter how interesting and intricate the reasons are, we cannot eat without this medication, and we simply need it fixed.

The rumours I have heard is that things should get a little better by November 2024, but that the long-term shortage will be in effect for another 18-24 months.

This seems to be the case. I saw my oncologist today, and he said that many of his patients are finding it a *bit* easier to get hold of Creon these days. This tallies with my experience, and a few weeks ago I was in a pharmacy in Europe that had Creon in supply. So one hopes that we're entering an easier era. Let's see!

I received a message from my GP/pharmacy yesterday, saying that they're currently unable to get hold of Creon. This is first time in a few months that it's been this bad, and this article makes things sound not good.

pharmaceutical-journal.com/.../taking-its-toll-the-global-pancreatic-enzyme-shortage

I've emailed my MP (again) about this. How are other people doing?

I’m so sorry to hear that Luke. Do you have any Creon at all?

I was able to get a prescription fully filled where I live, which is the first time in over 6 months that they were able to give me all the Creon on my prescription. I’m still taking a reduced amount though as they told me that supplies are still very inconsistent at the moment.

I also only heard back from one of my regional MSPs. I think I’m going to contact them again and send them the article you’ve linked. It’s all very worrying.

Isn't it just? I've got enough for the rest of the month, thank you - but I'm hugely concerned about the next year or so. As I've banged on about before, I think we just have to keep pestering them. What worries me is that now it's a global issue rather than a national one.

And, to anyone who doesn't know of this service (I've only just discovered it!), you can check stock at local branches of Boots here:

www.boots.com/.../

I am experiencing difficulties in repeat supplies in Co.Durham.England

I just spoke to a pharmacist who didn't sound optimistic. Our only hope is to get the subject as much coverage as we can, I think. Cliffy, do use that Boots link to see if there's any near you.